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CDC-CAMHS situation sorted and another meltdown at school

So today I got a call from the clinical director of paediatrics.
She said that she had spoken to the clinical lead for the CDC Dinky was seen at, and is up to date on Dinky’s case. She said she was pleased to hear that after the last time I contacted her that things had moved forward and Dr A had given her a provisional diagnosis. She could understand how frustrating and confusing the whole situation where CAMHS are/are not getting involved was. After discussing the best way forward with the clinical lead, Dinky has been put on the social communication pathway to be assessed formally for autism spectrum disorder. She said that with the case being flagged as PDA, that they will take into account the slightly different presentation, and that wouldn’t rule out a diagnosis, as it would come from a number of professionals, like educational psychologist, social communication team, speech and language therapist, OT, and reports from non medical professionals such as school (using the term professional very loosely there!!!), and other areas.
The waiting list is a year! Thankfully she said that they can see that we have been waiting a long time already, seeing as she spoke to me 5 months ago, so made sure dinky was bumped up the list, she still can’t say how long it will take, but not a year!
(I think I would have lost the plot!)
She also said that the clinical lead had bumped dinky up the list for OT as sensory issues could be playing a part in her behaviour at school! (I feel sorry for those dinky got bumped ahead of, but dinky is my baby, so I am glad she will be seen sooner!)

All in all a win for Dinky, and everything is moving in the right direction.

Dinky managed a whole day in school making it 3 days out of 5 for the last week of term. However, she was in the middle of a meltdown when I came to get her.
Dinky was refusing to come home. I had no idea why.
So I tried lots of different things… Nothing… And what didn’t help, is that she had no shoes on again! I was trying to keep her in the one room, but the teacher said something and Dinky darted out of the room and into the studio. I went in and she was watching the end of ratatouille. She didn’t want to put her shoes back on, she didn’t want to do anything but watch the film. Apparently the nurture group had just left the film… I instantly thought… ‘Why wasn’t dinky watching with the rest of them?’
I tried to get her shoes on, but she wouldn’t have it and threw one at my face. The head of nurture turned the film off and dinky ran again. She was hiding in a lunch trolley. She was saying she didn’t want to come home. I was starting to get a little upset, not at her, but because she didn’t want to come home. She ran off again under some tables as I tried to find out what was wrong. Finally, she had calmed down just enough to come out.

The thing that annoys me is the school don’t understand why she would say she didn’t want to come home if there wasn’t an issue at home. I have explained that I love her dearly, and she loves me, there is obviously something that didn’t go as she wanted it to and it can’t go right if we leave.

It turned out that she was in watching the film, but came out and then was angry. I still didn’t get out of her what went wrong. She wanted to stay and watch the film.
I will bring up with the school that they said the whole point in nurture was that it is the same all the time, and they don’t disrupt their routine. So why were they watching a film? I’m sure that isn’t a normal part of her school day! Oh, funny that, routine changes, dinky kicks off and I am left to sort it out.
I can never get over how astounded the teachers are when dinky then walks out with me professing her love for me so quickly after refusing to come home.

So 2 weeks of no school to worry about, statutory assessment in the pipeline, educational psychologist coming out, and dinky being put on the social communication pathway for ASD.

One thought on “CDC-CAMHS situation sorted and another meltdown at school”

Hi just thought I’d comment on the not wanting to go home bit. My dd (aged 10) with PDA often says this and I think its more to do with the transition itself rather than the place they are leaving or going to. It is really upsetting and makes you think what others might think but my dd did it when she was at school where she was completely distressed and other places (its like alhough they dont want to be there they dont want to leave either!) Hope this helps a little

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Thoughts on the crossroads of law, politics and society - for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….